My Stoma Story – 3 months on

To recap, 3 months ago I had an operation to remove my rectum and anus and create an ileostomy. This was done to prevent me getting rectal cancer due to a hereditary condition called Familial Adenomatous Polyposis, and followed an operation 30 years ago to remove my colon (large intestine).

This is my 3rd and concluding article on LinkedIn about my stoma story which I’m sharing to raise awareness and understanding about stomas/ostomies, and give me something to reflect on in the future.

So how are you?

This is the question I’m asked most. The answer? I’m astonished at how good I feel and how happy I am living my stoma.

Given a choice I'm sure we’d all opt to retain our ability to get rid of bodily waste the normal ways and not have to wear a bag for the rest of one’s life to collect said waste. Consequently getting a stoma isn’t a positive lifestyle choice, it’s done through necessity.

Prior to my operation I felt absolutely healthy and was not suffering from any ill effects from my colorectal disease (unlike, say, someone with an inflamatory bowel disease such as Crohn’s Disease or Ulcerative Colitis), and my ileostomy was not being performed to remove debilitating symptoms but to remove the certainty of dying from cancer.

For me then getting a stoma should have been a net negative, I should actually feel worse off having it, but I don’t; my life has changed but things are different and not worse. I actually feel quite proud of having a stoma, I’m not embarrassed about it, I'm quite happy with it, it’s going to be with me for the rest of my life and it’s now part of what makes me “me”.

I’m sure that the support I’ve received from the brilliant Stoma Care Team at St Mark’s Hospital has contributed massively to this positive experience, and I fear that patients who don’t receive support of this quality would have a more challenging and worrying time as they learn to live with their stoma.

Am I sitting comfortably?

Yes, at long last!

There comes a point after an operation when a day goes by and you realise that you haven’t thought about the operation. That for me was about 7 weeks post-op.

Prior to that it hadn’t been the stoma or midline wound on my abdomen that had been causing me discomfort. No, it was the wound in my backside which was, being blunt, a literal pain in the arse. Ok, that might be over egging it a bit, but it was a definitely a discomfort in the derrière.

Walking was fine, but sitting became uncomfortable after any period of time. Salvation of sorts came from a memory foam cushion from Amazon.

Sadly, what I really wanted, and couldn’t find, was a cushion with a strategically placed hole to correspond with where my bum hole once was.

The challenge with getting this wound to heal was that it was situated not only where the sun don’t shine, but also where the air don’t circulate and, unlike the midline wound, I couldn’t just expose it and let it breath. Well I could, but I don't think my wife would have appreciated it.

At risk of putting pictures in your mind you really don’t want, the solution I came up with was to stand legs akimbo astride an upturned fan heater each morning after showering. This sounds ridiculous, it definitely looked it, but who cares, after a week or so it really made a difference.

Anyway, I can honestly say that within 2 months of the operation everything was healed, nothing hurt, and I felt pretty much back to normal, or as normal as one can feel with a bag attached to one’s belly. Speaking of which...

The Bag

The output from an ileostomy is continuous (unlike a colostomy) and liquid/porridge (again unlike a colostomy). For that reason ileostomates like me wear a drainable bag so we can empty it when needed rather than replace it each time; I currently change the bag each morning after showering, and empty it before showering, in the afternoon, a couple of times in the evening, before bed and once during the night. But then again given that I've got an old man's bladder I have to go to the loo more frequently that anyway.

I do not suffer from leaks, the thing that most worries ostomates new and old alike and can make life a misery. Yes, there have been a few one-offs due to products failing whilst I was trialling them, but I can count these on the fingers of one hand.

Leaks are not normal and not something to put up with: if you are experiencing regular leaks there's sure to be a product or technique to sort it out – talk to your stoma nurse.

This wasn't the case in hospital though, my skin dips were causing leaks and this was addressed by using a stoma ring (like chewing gum placed around the stoma) which I continue to use post discharge. Whilst the stoma ring I was using stopped leaks, it wasn't stopping stoma output from seeping under the baseplate and causing my peristomal skin to become “excoriated”, i.e., red and sore due to being in contact with the digestive enzymes in the output.

The following photo shows how seepage appears on the stoma ring when the bag is removed; the ring should all be pale cream, not contaminated with output, anything not pale cream will cause excoriation.

I contacted the Stoma Care Team at St Mark’s and Rali Marinova, the stoma nurse who discharged me from hospital, suggested using a bag with a convex baseplate (like a dish), the idea being that this would press down into the skin dip, and then be held securely in place with a belt.

We tried this for a week or so but it was a bit uncomfortable; in addition to having skin dips and creases either side of my stoma at 3 and 6 o’clock, I have a large bulge at 12 o’clock caused by a parastomal hernia (where the intestine squeezes through the stoma hole in the abdominal muscle, occurring in about 10% of people who have an ileostomy). The following photo shows my stoma and surrounding skin in profile.

So whilst the convex baseplate was going into the dips it was also putting pressure on this bulge. To make matters worse, as my stoma had shrunk in size (as they do over 6-8 weeks post-op) I’d been reducing the size of the aperture I was cutting in the baseplate accordingly. Unfortunately one day I over did this and made it too small, and when I applied the bag the baseplate cut into the peristomal skin as shown in the following photo.

Cue visit to St Mark’s so Rali could take a look in person and figure out a solution to the seepage issue. This visit was absolutely brilliant as Rali was able to give me numerous tips on how to cut and apply the bag, and we could try different bags to see what worked. As a bonus I also got to say hello to Rali’s twin sister Petya, also a stoma nurse at St Mark’s, who had marked my stoma site prior to my operation.

I came away with a variety of bags to try along with different kinds of stoma ring; I never realised there was such a variety of bags, nor the amount of clever tech, design and user research that goes into them. I also never thought I'd get excited by the prospect of trying out different stoma bags... how one's life changes.

Over the following couple of weeks I diligently worked my way through the bags, keeping a log and taking photos (as one does!) of how well they were working for me (comfort, ease of application and draining, seepage, tendency to “balloon”, etc.).

I’ve settled for now on a bag and ring combination that works well for me. I’m changing my bag every morning in order to keep an eye on seepage and excoriation, but given how well this is now being controlled I'm pretty sure I'll soon be able to go to every 2 days.

Hair

Whilst the hair on my head is depleted, it still grows in copious amounts on the rest of my body including my belly. This makes applying, and removing, a stoma bag challenging. The removal bit is made a lot easier using a solvent spray, but the ability for the base plate to stick is certainly compromised by hair, so it has to be removed.

Hair removal is complicated by the fact it grows on the peristomal skin right up to the stoma, and the stoma is very delicate and highly vascular, so it bleeds easily. Shaving with a regular razor is hence a bit difficult. Some people protect their stoma whilst shaving by placing an empty toilet roll holder over it, but I found this just as tricky.

My solution was to spend ￡12 on a USB rechargeable hair trimmer marketed to women on Amazon… and it’s pretty good. The eyebrow attachment works best, giving it a regular rinse with water during use helps as does keeping the skin wet too. It struggles a bit power-wise cutting thicker hair, so I just use it in the immediate proximity of the stoma and use a regular double bladed disposable razor for the broader area.

Sleep

Sleeping on my sides, as is my norm, appeared to make seepage worse, so I ended up sleeping on my back and didn’t sleep well as a result, waking up every hour or so. Not ideal.

Thankfully the oval shaped Eakin Cohesive StomaWrap ring that Rali suggested using made a big difference and I’m now back to the bliss of sleeping on my side… left side at least, I’m wary of squishing the bag by lying fully on my right side.

As I've said above, I normally only have to get up once during the night around 3am to empty my bag, but that's ok as I normally need a wee at that time anyway, and as long as my ADHDified brain doesn't fire up and start thinking about random stuff I can normally go back to sleep pretty quickly.

Food and drink

My diet is now pretty much back to the way it was pre-op, including spicy food which I love.

However, I’m now more conscious about what I eat and drink; I didn’t think having a stoma would affect my diet as the big change to my gut was the removal of my colon 30 years ago and this operation was just changing the “output port”. I was wrong though, and I’m now much more susceptible to fibrous food (veggies with skins, beans, etc.) that bulk up my output, give me a bit of an uncomfortable belly or generate wind (or all three - I'm looking at you kidney beans). I’m also conscious of making sure I chew my food really well to ease its passage.

With regard to booze, it all makes my output more liquid with the additional curiosity that some beers make it frothy (which, showing my age, always makes me think of the Cresta Bear).

I’ve also found that red wine is miraculous in how it can appear in my bag before the meal that preceded it… and believe me, the colour leaves no doubt :/

I now work on a cost/benefit approach to what I eat and drink: if the enjoyment of something outweighs any discomfort or nuisance it causes then I’ll continue to eat/drink it, if not I won’t. So, Roasted Butternut Squash risotto is sadly removed from the evening meal roster, but our authentic Mexican Chile con carne is definitely staying.

Business As Usual

Bag changes now only take 5 minutes, seepage is under control, I don’t get leaks, I feel comfortable, and I’m confident in managing my bag and caring for my stoma.

For most of the time I notice my stoma no more than I notice wearing my glasses. It's my new normal, it’s just part of my life, and life is good.

Postscript

I was discharged from hospital with a supply of bags that I'm no long going to use, and I have accumulated quite a few other bags and products over the past three months whilst trialling them.

Ostomy products cost quite a lot of money but sadly unused ones cannot be returned to the NHS, so I’ve therefore donated them all to Jacob's Well Appeal who will send them to countries where people cannot afford to pay for their stoma supplies.

See also part 1 and 2:

• My stoma story
• My stoma story - 1st month